Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with n...
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From the information on this site I have realise that the pain in my index finger is probably glomous tumors.
My symptoms are the same as post people suffering from this. What I would like to know is what happens if these tumors are not removed. None of the doctors I have seen have even suggested this, they say they can't think what the pain could be. As they are not even aware of this condition I feel a bit vary about letting them near me with the operating knife. Any suggestions please Thanks. Posted on 05/11/08, 07:05 am |
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Hi
well I have had plenty of fribromas removed but they were inplaces that dangered my life in some way Well i did have one removed from my ankle not really dangerous but it was big got cut and was really messed up but the dr went crazy and removed others from all over my body that was horrible next time it will only be ones needed . my suggestion is if it is really bad to have it removed but try to find someone who knows NF . Is this on the outside or inside. 
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I have had several large growths remove from inside my body. But unfortunately this doctor or treatment is no longer available to me.
The glomous tumors are inside my index finger, it hurts like hell sometimes, for no reason or when it is lightly tapped. The doctor is not available as I am now located in another country.
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I know how you feel. It really bites that we have to beg for treatment. Keep looking. If you go to the CTF website, they may have a doc in your area they can recommend. God bless and best of luck.
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For glomous tumors removal will get rid of the pain. Don't think they grow back, glomous tumors aren't related to NF. People with NF seem have it more than the general population
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Thanks, thats what I wanted to know
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